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Adult Autism Assessment / USA

Pistachio

Well-Known Member
Has anyone gotten an assessment/diagnosis as an adult? I'm wondering what's involved, costs, benefits to a diagnosis for a mid-life female. I've heard it costs thousands to get a diagnosis, and almost impossible to get a diagnosis later in life as a female.

If not a diagnosis, what about skills? Did you develop any without the diagnosis? What options are there?

Searching for stuff on this, I mostly find info for babies/toddlers and their parents.

As I mentioned, I'm a middle aged woman so I'm not sure it matters for my career, maybe for Social Security benefits, but also wondering what you get from just therapy/coaching, whatever. My main difficulty is mind blindness, I don't mind read, I don't look people in the eye, I probably just don't "get it" most of the time, which might cause difficulties with people around me, I don't know. But I'm functional, normal (I think) in most other ways. Yet....I'm still struggling, a lot. Meltdown levels.

So what do adult maybe Autistic people do? Diagnosis? Is skill building even possible with stuff like mind blindness / lacking Theory of Mind?
 
I'm turning 40 in a month and I am in between assessment and decision. It was covered by medicaid as I was referred to an ADOS-certified assessor by my current therapist. The waiting period to be assessed was 4 months, which I hear is shorter than many. My oldest is on the waiting list, at 16, and the cost out-of-pocket is $950, and the waiting list is about 18 months, though they have come up after only 4 months. At least, that clinic has reached out to schedule.

The assessment itself felt like it was for children but adapted to adults. I had a clinical interview where I gave a history (2 hours) and an in-person interview where I took tests that seemed to test intellect and memory, as well as some social questions and storytelling (4 hours). Later, the assessor took an early-childhood history from my mother. A couple of days later, the assessor said she needed more information so I took two assessments of True/False questions totaling 700.

I am greatly concerned by the need to gather so much information and worry that the assessor is looking for other options. She said there were holes she was trying to fill when she gave me the True/False assessments. I do certainly feel like I don't present in a way that is obvious. My face was neutral as a toddler, I had no tantrums and I am unable to show pain, even now, despite having meltdowns privately.

I went in for an assessment after applying for Voc Rehab for the second time (I finished the program and still couldn't hold down a job), and I have faced a lot of skepticism along the way. It's been a harrowing experience, but I am not sure any middle-aged woman feels good about being assessed.

Yesterday I read through the DSM-V to identify possible "differential" diagnoses in order to ease my mind, and came up with a list. I apologize for replying while in the thick of the waiting period, as I am quite stressed, overwhelmed, and in despair. It doesn't help that the assessor was much younger than me (late 20s, I'd guess), and I felt she'd have little concept of a young child in the 80s. On the other hand, she will have been exposed to recent research about autism in women, which is a potential bonus.

There are many sources on YouTube of autistic women who have been diagnosed in their 30s and beyond, and they offer a lot of insight into the process in its totality. I would definitely look there to get a broader view of the assessment experience. I'm just a bundle of nerves, and it's an incomplete picture, so please don't just go off of what I'm saying.

Among those on YouTube I have found helpful are:

Sarah Hendricx (diagnosed in her 40s)
Yo Samdy Sam (diagnosed at 34 I think)
Purple Ella
Stephanie Bethany
Neurodivergent Rebel

And I found Asperger's From The Inside (his name is Paul) to be very informative, too.

Best of luck, I am sorry if this is only stressful to read and not helpful.
 
As far as skills are concerned, I have benefitted a lot from trauma-informed care, having had traumatic experiences as a child, and not at all from CBT. I am a single parent of two teenagers and am on housing, getting help from Voc Rehab, and have been on other welfare programs for the past 10 years or so.

I have not applied for social security, though I may if I get an ASD diagnosis. I dislike the idea of throwing money at the problem, but have to come to terms with my limitations. After self-diagnosing, the most beneficial thing for me has been to reframe my challenges as social and sensory more than emotional in origin.
 
I live in the Midwest. I am a 56 year-old male. I asked my doc if there was a place that could do an adult ASD diagnosis. They gave me a local office that had one doc that diagnosed adults with ASD. I waited for five months for the appointment. With my insurance, it cost about $200. The assessment took one hour. I had prepared evidence from school records and interviewed my mother for preparation. During the assessment, the doc also talked with my wife.

I got a letter simply saying I had ASD.

I had suspected I had ASD for a couple of years before my diagnosis. However, the relief I felt by having someone say I had ASD was wonderful. It put so much into context for me. It has let me be more forgiving with myself. I can make so much more sense of the world. I don't have to worry about trying to reach the starting gate of normal, but simply be the best version of myself I can. (Sorry if this sounds too much like a series of bumper stickers.)

I also think it helps with mind blindness. I can figure out how communication breaks down between autists and NTs. It allows me to understand what NTs need in a conversation or interaction.

However, to meet the criteria, you must also meet this:

Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

How much does your mind blindness cause problems in your life?
 
Has anyone gotten an assessment/diagnosis as an adult? I'm wondering what's involved, costs, benefits to a diagnosis for a mid-life female. I've heard it costs thousands to get a diagnosis, and almost impossible to get a diagnosis later in life as a female.

If not a diagnosis, what about skills? Did you develop any without the diagnosis? What options are there?

Searching for stuff on this, I mostly find info for babies/toddlers and their parents.

As I mentioned, I'm a middle aged woman so I'm not sure it matters for my career, maybe for Social Security benefits, but also wondering what you get from just therapy/coaching, whatever. My main difficulty is mind blindness, I don't mind read, I don't look people in the eye, I probably just don't "get it" most of the time, which might cause difficulties with people around me, I don't know. But I'm functional, normal (I think) in most other ways. Yet....I'm still struggling, a lot. Meltdown levels.

So what do adult maybe Autistic people do? Diagnosis? Is skill building even possible with stuff like mind blindness / lacking Theory of Mind?
You sound an awful lot like me. I was diagnosed at age 60. I was at a job finding class at HHS and one of the instructors noticed I never looked anyone in the eye. They arranged an evaluation.

I always knew I was different somehow, but could never figure out what it was. Things like facial expression, body language, and intonation are meaningless to me. I once took a facial expression quiz and my score was just over half of what I would get by random guessing.

The diagnosis gave me answers, and allowed me to understand myself and why I was the way I was. It allowed me to stop masking and be myself. This was the important part.

Don't expect anything from Social Security. I applied and they said, since I was able to work then it was not a disability. The fact that I had extreme trouble finding work and difficulty keeping jobs was irrelevant.

Best of luck
 
Has anyone gotten an assessment/diagnosis as an adult? I'm wondering what's involved, costs, benefits to a diagnosis for a mid-life female. I've heard it costs thousands to get a diagnosis, and almost impossible to get a diagnosis later in life as a female.

If not a diagnosis, what about skills? Did you develop any without the diagnosis? What options are there?

Searching for stuff on this, I mostly find info for babies/toddlers and their parents.

As I mentioned, I'm a middle aged woman so I'm not sure it matters for my career, maybe for Social Security benefits, but also wondering what you get from just therapy/coaching, whatever. My main difficulty is mind blindness, I don't mind read, I don't look people in the eye, I probably just don't "get it" most of the time, which might cause difficulties with people around me, I don't know. But I'm functional, normal (I think) in most other ways. Yet....I'm still struggling, a lot. Meltdown levels.

So what do adult maybe Autistic people do? Diagnosis? Is skill building even possible with stuff like mind blindness / lacking Theory of Mind?
One sort of change is autism is viewed slightly differently in law(autism diagnosis) so if you cause what nts call trouble, you might have power ,also medicine is viewed differently, our wiring for anxiety appears to be inbuilt ,not stress so that changes dosage, length of therapy ,sensitivity
 
Thanks for your replies, they were helpful.

As for videos, I've checked Yo Samdy Sam and Asperger's From The Inside, but they're not US based so I thought it might be different there.

I might not go for the diagnosis since it's so expensive, and time consuming (and much later in life), but I'm hoping to find more on skills, etc at least.

Until a few years ago, I didn't even know about the NT/Autism differences. I'm exhausted from all of this, well, way beyond exhausted.
 
There are lots of voices here and we all have our own ups and downs with the assessment experience, I've found.

But I've also found here that the empathy and support for following your own path through this, however and wherever it leads, is universal. We're with you.
 
I might not go for the diagnosis since it's so expensive, and time consuming (and much later in life), but I'm hoping to find more on skills, etc at least.

Stick around here!!!! I've found that I have learned so much from the autistic community that I really don't need a professional diagnosis to access those skills/resources. You really only need it if you're going for government assistance or the like.
 
Until a few years ago, I didn't even know about the NT/Autism differences. I'm exhausted from all of this, well, way beyond exhausted.

You need help. Ask you insurance company about the cost of an ASD diagnosis. Mine was about $200, but it was so liberating. The hard part is finding someone that can diagnose adults, especially women.

But there are many resources out there. I have found this a very good read: Acceptance as a Well Being Practice

There are also regional and local groups you can join (at least when this pandemic is over). For example, The Asperger / Autism Network (AANE) - Asperger Syndrome (Asperger's) & Autism / ASD Obviously, there are online groups.

The biggest benefit to understanding I had autism was the ability to forgive myself.
 
I had similar concerns as an adult being diagnosed for the first time. However, for the diagnostic process billing, I was prepared for the roughly $1700 bill. When I called my insurance company they were quite willing to say that unless you are under 18 years of age,...nothing would be covered. If you want mental health services,...it's all out of pocket. So, much to my surprise when I talked to billing at the psychologist's office, they knew the correct billing codes,...and I paid around $200. What is involved? My experience was 2 appointments. The first appointment was my wife and I being split up,...she did about an hour interview with the psychologist to help the psychologist understand "What is it like living with me?" but more towards identifying potential autistic traits. I, on the other hand, was pulled aside to do several different cognitive performance tests, each designed to challenge and measure where my strengths, weaknesses, and IQs in specific areas. That part took a few hours. Then, after my wife's interview,...my wife had to leave for work,...I was interviewed by the psychologist, and did a few more performance tests. That took about another hour. Then,...another hour in another room doing a written test which appeared to be a much more comprehensive version of the on-line "autism quotient" test. Several weeks later, after all the information was tabulated and a final written report created, another hour appointment to go over the test results,...and diagnosis. In the US, there is the American's with Disabilities Act (ADA),...and a clinical diagnosis of autism is covered. Although the protections under the ADA are limited, it does require an employer to provide some limited accommodations if specifically asked for,...it often has to go through Human Resources Departments,...forms filled out, etc. Don't expect your boss to just comply "because you said so." The ADA also includes limited legal protections, considerations, and accommodations should one be arrested and presented in front of a judge. So, there are some real benefits to being professionally diagnosed. To your later questions regarding therapy,...at least in the US,...most of this will be out of pocket expenses, your time, and/or a lot of self-learning. Personally, I logged onto a website called "The Great Courses" and in there is a series of courses on "Understanding the Brain", "Understanding Nonverbal Communication", "Effective Communication Skills", "How Conversation Works", etc. Most of these courses were quite comprehensive and helpful, however, as an autistic individual trying to understand neurotypical communication, it is quite challenging. Basically, as an autistic, it gives you the skills to "mask" or "camauflage" your autism better. This whole concept of autistic "masking" is, for many, a potentially dangerous situation. Like it or not, neurotypical behaviors, right or wrong, are what make up societal norms and culture. Like it or not, neurotypicals, in general, have a difficult time with anything different. I know, that seems like the pot calling the kettle black, but it is true to anyone that has been subject to bullying, racism, discrimination, prejudice, etc. So, what do "helpful", "well meaning", parents, teachers, and therapists do to autistics? It all comes down to "Do this, not that". However, to an autistic, this is often perceived, especially to vulnerable young people, as "Who you are is not acceptable" which leads to depression, anxiety, and suicide. To the questions regarding "female vs. male" autism diagnosis,...I would imagine that psychologists are much better at this than they were, say, 10 years ago. Having said that, statistically speaking,...females, on average, are better at the skills of "observe and copy" social and communication,...aka "masking". As an adult female, your social and communication "masking" skills, conscious, or not, may lead a psychologist to score you as "less impaired". The problem is, realistically, how do you simply "shut things off" for the purposes of your professional evaluation? As an adult male, I made sure that I was off any "nootropic" supplements for a few days before my evaluation. I made sure that "I was at my worst",...my brain felt hot, I was in a fog, my eyes hurt, the ringing in my ears were a distraction, I made sure I was not "masking" as best I could,...basically,...made it obvious. Just make sure you don't "act" in front of a trained psychologist,...they will see right through it.
 
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Thanks again for your comments. Still recovering from the meltdown/exhaustion so I've been slow to reply, sorry.

I've checked some of those videos and at least in those cases it kind of sounds like I don't have "official Autism" or should I say I might not qualify in that way, but maybe in certain areas/characteristics. I've been reading a ton of books, or what's at my library, to learn more than what's on this forum.

I also thought Interactive Autism Network had some good articles, unfortunately they shut down their project so it's not being updated anymore.

I stumbled on some stuff on Autism and vaccines too. I kind of remember stuff about this from a few years ago. I know it's been discredited at this point but who knows what they really put into vaccines/other chemicals...but it did clue me into more discussion on mitochondrial disorders and stuff like encephalitis. I might get more books on those topics to get more of a handle on what they were talking about.

Thanks again!
 

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